I am a bad caregiver and I feel like I can't do it anymore

Posted by yolande73 @yolande73, May 22, 2023

My husband came home just a little over a year ago and told me he had stage 4 Head and Neck cancer. My world stopped and I felt as if life had somehow betrayed us.
He had been to the doctor 6 months earlier they did the tests and imaging and told him he did not have cancer. He went back to work as a long-distance Truck driver. The only thing is he did have cancer, he knew he had cancer, he just hid it from me and got no treatment for 3 years. He lied he let me buy a house knowing he was dying the whole time. I can't work as I have a severe spine injury that leaves me in pain 24 hours a day I am unable to lift over 5 lbs. Forgive my rambling...

Anyways fast forward to April 25 2022 He comes home from the urgent care and tells me he has cancer. We went to the oncologist who told us it was stage 4 and the best advice he could give us is that if there was a chance my husband should take it. So he did radiation for 7 weeks with one day of chemo a week. They stopped the chemo early as his body could not take it. After the PET scan, the radiation doctor told us it was partially successful. He also stated that if the cancer started to grow and he received no treatment he would have 6 months to a year. Well, the cancer is growing it has been 11 months of tests and no treatment. 2 weeks ago the ENT and the oncologist decided that the only option left is a Hail Mary surgery that is very risky and has a low survival percentage.

The whole point of this is that I am a bad caregiver, I make sure he has his formula and water and his pain pills. I have him watch tv on the couch when he is awake. He gets up at 9 am and is napping by 11 am wakes up to eat at 4 pm and goes to bed for the night at 730pm. I make it a point to spend an hour with him every day when he is awake, other than that I hide in my office and come out to check on him periodically. I can't sit with him and watch him die, I can't sleep by his side at night afraid that I might bump him and cause him pain. I forget his schedule during the day because he will get up and feed himself slot so when he doesn't I don't know. Until I do.

He spent the first 4 months at home telling me every chance he got that he was dying and I needed to accept it. Okay, I got that. Then he told me I don't love him enough, I leave him alone too much, I don't do anything for him. I go nowhere I talk to no one and all I do is the best I can to take care of him. But sometimes, a lot of times, more and more I just want to run away. I would rather face off with a mountain lion than do this one more day. I am tired I am lonely and I am scared and I just don't know what to do. And now he is having surgery on Wednesday that no one thinks he will survive...

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I am very sorry to hear of your situation. I would try and get professional support immediately. Suggestions:
local clergy person
hospital clergy person
crisis hot line
medical social worker
community social worker
community health center
psychiatrist
palliative care counselor--this will take a referral
is hospice an option?They will provide counseling of all kinds.

This is a very difficult crisis that no one can manage alone. Your PCP might help, and the hospital itself should have staff. It is as much an emotional emergency as it is physical one. Do you have anyone who can be with you for support? It seems like you need support quickly and later can refine that. I hope you can find even one person to talk to.

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@yolande73, this is a lot to bear and you need support. You are scared. And to hide from your fear is a normal reaction. As @IndianaScott always says, only superheros wear capes. You don't have to.

I completely agree with @mir123. I think that you would benefit from professional support from an oncology social worker or hospice. Mir lists many possible options. Getting help for yourself is NOT selfish. Put your oxygen mask on first.

Has your husband's care team mentioned hospice? Do you have access to hospice support?

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It is entirely natural for anyone in your situation to feel overwhelmed, sad, betrayed, and afraid. Lots of people hide a cancer diagnosis, by the way. I know two people living within less than a mile from me who have told me they kept it a a secret from loved ones for some time. Plus I have a family member who kept a diagnosis from me and everyone for several months.
You are not alone. You are not the only person who feels inadequate to the task of saying goodbye to a loved one. Not a single one of us is ever prepared to walk this path, to navigate the road to an approaching death.
I too have been a VERY BAD caregiver. The last months of her life, my grandmother lived in my bedroom. The emotional stress, physical stress, and lack of sleep sent me into a tailspin that lasted for years after she passed.
You have friends everywhere sending you compassion, even if you never meet or know them. I'm so glad you reached out to share your story!

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I appreciate the helpful comments and suggestions that have been made. I have suggested hospice to my husband several times but he refused. He told me today that he thinks that we made a mistake 6 months ago and should have moved back east where there are more hospitals. He wanted to move to his Mother's home but as I told him then we would need to sell our home and everything else as well as drive across the country 2700 miles to get him there. I did offer to take him if that is what he really wanted but he decided to stay here and work with his current doctors. We asked his doctor about the care team that was in the office lobby a couple of times and the doctor said you have that already, funny we never met them! To get any information that my husband wants I feel like I have to bully his doctor to get it. Today at his appointment pre-surgical the doctor tells him best of luck if you survive we will see you in 4 weeks. It is a bit concerning that when I asked about setting up rehab care for him I keep getting told let's see if he survives first. I am really not comfortable with this approach. I told them during radiation that I was having a very rough time taking care of him, but that fell on deaf ears. I had to get a friend to come help me, which in the end was not a great decision I needed the help so I am glad she came but it cost me my friendship of several years as she feels differently about his impending death than I do. I hope he survives, I hope he goes into remission, I hope for nothing but good things, but I do not expect it. When he tells me he has headaches all day, and the ENT surgeon says that is from his occluded jugular I worry, when he says his strength is disappearing I believe him, and when he tells me he is dying I believe that too. I know there are cheerleaders out there that are always peppy and positive but that is not helpful at this moment realism and truth is what is called for now. I can't take any more shocks.

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@yolande73

I appreciate the helpful comments and suggestions that have been made. I have suggested hospice to my husband several times but he refused. He told me today that he thinks that we made a mistake 6 months ago and should have moved back east where there are more hospitals. He wanted to move to his Mother's home but as I told him then we would need to sell our home and everything else as well as drive across the country 2700 miles to get him there. I did offer to take him if that is what he really wanted but he decided to stay here and work with his current doctors. We asked his doctor about the care team that was in the office lobby a couple of times and the doctor said you have that already, funny we never met them! To get any information that my husband wants I feel like I have to bully his doctor to get it. Today at his appointment pre-surgical the doctor tells him best of luck if you survive we will see you in 4 weeks. It is a bit concerning that when I asked about setting up rehab care for him I keep getting told let's see if he survives first. I am really not comfortable with this approach. I told them during radiation that I was having a very rough time taking care of him, but that fell on deaf ears. I had to get a friend to come help me, which in the end was not a great decision I needed the help so I am glad she came but it cost me my friendship of several years as she feels differently about his impending death than I do. I hope he survives, I hope he goes into remission, I hope for nothing but good things, but I do not expect it. When he tells me he has headaches all day, and the ENT surgeon says that is from his occluded jugular I worry, when he says his strength is disappearing I believe him, and when he tells me he is dying I believe that too. I know there are cheerleaders out there that are always peppy and positive but that is not helpful at this moment realism and truth is what is called for now. I can't take any more shocks.

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I'm sorry to hear about your suffering. I don't have any pop-psychology or deep meaningful experiences to relay, but you might try to remember that you are not alone. Many of us are experiencing things we never imagined. Our lives are turned topsy turvy and our planned futures have disappeared at the drop of a diagnosis. It helps me to know that others have walked this path and survived the trials of thankless, seemingly endless caregiving. It's tough to accept that reality can win against all of our plans. I'm still trying to accept that.

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Wow, you are in a very, very tough place. I don't have any upbeat things to say. I just want you to know that you and your husband are in my thoughts & prayers.

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@yolande73

I appreciate the helpful comments and suggestions that have been made. I have suggested hospice to my husband several times but he refused. He told me today that he thinks that we made a mistake 6 months ago and should have moved back east where there are more hospitals. He wanted to move to his Mother's home but as I told him then we would need to sell our home and everything else as well as drive across the country 2700 miles to get him there. I did offer to take him if that is what he really wanted but he decided to stay here and work with his current doctors. We asked his doctor about the care team that was in the office lobby a couple of times and the doctor said you have that already, funny we never met them! To get any information that my husband wants I feel like I have to bully his doctor to get it. Today at his appointment pre-surgical the doctor tells him best of luck if you survive we will see you in 4 weeks. It is a bit concerning that when I asked about setting up rehab care for him I keep getting told let's see if he survives first. I am really not comfortable with this approach. I told them during radiation that I was having a very rough time taking care of him, but that fell on deaf ears. I had to get a friend to come help me, which in the end was not a great decision I needed the help so I am glad she came but it cost me my friendship of several years as she feels differently about his impending death than I do. I hope he survives, I hope he goes into remission, I hope for nothing but good things, but I do not expect it. When he tells me he has headaches all day, and the ENT surgeon says that is from his occluded jugular I worry, when he says his strength is disappearing I believe him, and when he tells me he is dying I believe that too. I know there are cheerleaders out there that are always peppy and positive but that is not helpful at this moment realism and truth is what is called for now. I can't take any more shocks.

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@yolande73, I recommend that you contact a local hospice or someone at the hospital like chaplaincy or social work to inquire about supports for YOU. Hospice and social work services are available for caregivers. They can also help you navigate the challenges in communication with the care team.

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Well to give an update he survived his surgery and is doing good. But he has only ben there 2 days, I talk to the doctor yesterday about a SNF and he agreed it would be a good Idea. However the surgeon and her staff came today and said that they want him to come home that the risk of infection at a facility would be to high. I told them again that I cannot take care of him that I need help and they are telling me that it will be fine. They have ignored my voice and are trying to release him to my care today or tomorrow. I can't do this anymore, I don't have the energy to do this anymore... Why don't people listen? I feel like I want to run away and hide, If I didn't have animals to care for I would... It is sad that the first thought I had when he came out of surgery is how in the hell did you survive. The second was here we go again. For the last two days I have spent so much time crying I am at my limit I can't do any more and no ne is listening to me and I don't know what to do.

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yolande73,
I respect you for being totally honest. I really do understand how you feel. I have been married for 55 years to a man that I love. He has had dementia for several years but it has progressed to Alzheimer's with hallucination's. Today he has thought that I was someone else almost all day long. You can't imagine some of the things he has said. This hurts beyond words. While I was fixing dinner tonight he said that he was glad that I came back because there had been someone else in our house.
People ask us how we are doing but I really don't think that they want to hear the truth. I relate to the crying. I have cried more in the last 2 months than I have in 55 years.
We both just have to get strong and try to cope one day at a time.
Maybe we both need to try to find some help so that we can cope with this awful situation.
I think that I am going to call the Alzheimers Association and see if they have any suggestions.
Hang in there. We can get through this.

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@yolande73

Well to give an update he survived his surgery and is doing good. But he has only ben there 2 days, I talk to the doctor yesterday about a SNF and he agreed it would be a good Idea. However the surgeon and her staff came today and said that they want him to come home that the risk of infection at a facility would be to high. I told them again that I cannot take care of him that I need help and they are telling me that it will be fine. They have ignored my voice and are trying to release him to my care today or tomorrow. I can't do this anymore, I don't have the energy to do this anymore... Why don't people listen? I feel like I want to run away and hide, If I didn't have animals to care for I would... It is sad that the first thought I had when he came out of surgery is how in the hell did you survive. The second was here we go again. For the last two days I have spent so much time crying I am at my limit I can't do any more and no ne is listening to me and I don't know what to do.

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Yolande, please ask for help from a hospital social worker. They can help mediate and find resources for you.

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